RED LABS positive Lyme result

[Martin aka paused||M.E.]

I got a very strange result from RED LABS. I did their qPCR test for phages and they diagnosed me with “relapsing fever”.

This is what I found:

“ Tick-borne relapsing fever is characterized by recurring febrile episodes that last ~3 days and are separated by afebrile periods of ~7 days duration. Along with fever, patients may experience a wide range of nonspecific symptoms (Table 1). Each febrile episode ends with a sequence of symptoms collectively known as a “crisis.” During the “chill phase” of the crisis, patients develop very high fever (up to 106.7°F or 41.5°C) and may become delirious, agitated, tachycardic and tachypneic. Duration is 10 to 30 minutes. This phase is followed by the “flush phase”, characterized by drenching sweats and a rapid decrease in body temperature. During the flush phase, patients may become transiently hypotensive. Overall, patients who are not treated will experience several episodes of fever before illness resolves.”

Well. Year's ago... I think 20 years ago I was in Portugal. It's a risk area for these types of Borrelia. I had a very high fever, had to go to the doc. The fever lasted a few days (3-4) and was horrible. Fun fact: nobody else got fever in my family nor did I have flu symptoms. So it's not very likely this was a viral infection. I didn't got diarrhea or sth related, so no food poisoning. But the fever didn't relapse. After a few days it was gone.

KDM diagnosed me with Lyme in 2019 (of course). He prescribed three weeks of an AB IV and six months of Rifaximin (which my GP stopped after six weeks telling me that KDM must be crazy). I didn't improve at all.

I don't remember a tick bite or skin sensations.

So my questions:

Can Lyme show up many years later? ME onset (very mild) in 2013.
Can one have Lyme but doesn't react to AB treatment?

What to do now? Liquor was negative, some weak positive Western Blots but I think for B. Burgdorfii. Some were negative.

Is RED Labs the Belgian version of Armin Labs = not reliable?

Should I try Disulfiram or what to do now? A Lyme doc said I have to do a LTT. But I know this is not a reliable test bc of cross-reactions with other pathogens and the Robert Koch Institut (sth like the German Holy Chair for infectious diseases) says it's not reliable due to false positive outcomes.

What to do now? I don't want to miss sth!

Thanks a lot

Martin

 

[Judee]

@Martin aka paused||M.E., your health is so fragile that if you do Disulfiram, have Janina research it first. (There's yt videos, disulfiram for lyme websites, and a FB group.)

I also like this doctor's website because she gives a lot of cautions and info: https://www.karenvrchota.com/healthnews/2019/9/25/disulfiram-for-lyme-disease

I was going to post another doctor's website but that site is not pulling up for me right now.

Anyway, if you decide to go ahead with the DSF make sure you abide by all the cautions and start extremely low...like I would say to ask for 5mg to start and just once per week or maybe twice only.

Dr Kinderlehler over here in the states will start his "fragile" patients out at 32.5mg once a week I believe but with ME I would still ask for a much lower dose to start.

I was just listening to Dr. Bransfield being interviewed by Kristina Bauer and he said he does start some of his patients at 5mg like every 3 days and after a time increases to every two days.

When she asked if he does the increases every two weeks and he said, "No, not necessarily...there's no rush." He also said if he does increase them and they get herx, he has them go back down to a lower dose.

One thing he said that was encouraging is that for most of his DSF patients, the fatigue is the first to go. I have not tried DSF yet but that was encouraging to me.

Anyway, all that to say, please be very careful if you go that route. I do think since you can recall an incident in your history that it is reasonable to suspect that could be part of your health puzzle though.

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E., your health is so fragile that if you do Disulfiram, have Janina research it first. (There's yt videos, disulfiram for lyme websites, and a FB group.)

I also like this doctor's website because she gives a lot of cautions and info: https://www.karenvrchota.com/healthnews/2019/9/25/disulfiram-for-lyme-disease

I was going to post another doctor's website but that site is not pulling up for me right now.

Anyway, if you decide to go ahead with the DSF make sure you abide by all the cautions and start extremely low...like I would say to ask for 5mg to start and just once per week or maybe twice only.

Dr Kinderlehler over here in the states will start his "fragile" patients out at 32.5mg once a week I believe but with ME I would still ask for a much lower dose to start.

I was just listening to Dr. Bransfield being interviewed by Kristina Bauer and he said he does start some of his patients at 5mg like every 3 days and after a time increases to every two days.

When she asked if he does the increases every two weeks and he said, "No, not necessarily...there's no rush." He also said if he does increase them and they get herx, he has them go back down to a lower dose.

One thing he said that was encouraging is that for most of his DSF patients, the fatigue is the first to go. I have not tried DSF yet but that was encouraging to me.

Anyway, all that to say, please be very careful if you go that route. I do think since you can recall an incident in your history that it is reasonable to suspect that could be part of your health puzzle though.

I puzzled in my post above that I can't remember...
DSF is dangerous that's good to know! Thank you!

This is a no go:
Disulfiram has been found to inhibit the enzyme dopamine-beta-hydroxylase, blocking the metabolism of dopamine into norepinephrine. Combined with the dopamine agonist and/or reuptake effect of stimulants, this can cause a dramatic rise in synaptic dopamine levels, resulting in sleeplessness, paranoia, and, in extreme cases, stimulant psychosis.

 

[Judee]

DSF is dangerous that's good to know! Thank you!

It does have some cautions however some people with Lyme are finally getting their lives back with it too so you have to weigh carefully the good against the bad but as Dr Marty Ross said, it definitely has his attention.

 

[Martin aka paused||M.E.]

It does have some cautions however some people with Lyme are finally getting their lives back with it too so you have to weigh carefully the good against the bad but as Dr Marty Ross said, it definitely has his attention.

I'm low in nor adrenaline so I should not take it.

 

[pattismith]

I puzzled in my post above that I can't remember...
DSF is dangerous that's good to know! Thank you!

This is a no go:
Disulfiram has been found to inhibit the enzyme dopamine-beta-hydroxylase, blocking the metabolism of dopamine into norepinephrine. Combined with the dopamine agonist and/or reuptake effect of stimulants, this can cause a dramatic rise in synaptic dopamine levels, resulting in sleeplessness, paranoia, and, in extreme cases, stimulant psychosis.

Thank you for this information Martin!
Thank you @Judee

I guess rising brain dopamine may be one way Disulfiram might improve some of us!!

 

[Martin aka paused||M.E.]

Thank you for this information Martin!
Thank you @Judee

I guess rising brain dopamine may be one way Disulfiram might improve some of us!!

Yes I wrote that in the DSF Facebook group that we also profit from Dopamine agonists.

our diseases might be very much related

 

[maple]

Martin- prolonged doses of rifampin are sometimes given for bartonella and similar infections. DSF is helping many people with long-term Lyme and yes, you can have Lyme for decades. Highly recommended Kinderlehrer’s book. A severe reaction to DSF is almost diagnostic for Lyme I have heard.

 

[maple]

Oops- I meant babesia- but maybe also bartonella? In any case for those with the suite of Lyme etc long term rifampin is sometimes recommended

 

[Cipher]

I got a very strange result from RED LABS. I did their qPCR test for phages and they diagnosed me with “relapsing fever”.

Unfortunately it seems like the Phelix Phage test has a very high false-positive rate, see this post.

A Lyme doc said I have to do a LTT. But I know this is not a reliable test bc of cross-reactions with other pathogens and the Robert Koch Institut (sth like the German Holy Chair for infectious diseases) says it's not reliable due to false positive outcomes.

One thing to keep in mind is that different labs use different LTT techniques, so different labs will have different rates of sensitivity, cross-reactivity and false-positives. According to this study conducted by IMD Berlin in collaboration with Charité University Medicine Berlin, IMD Berlin's Lyme LTT test had a sensitivity of 89,4% and a specificity of 98,7%. It seems like the rate of false positives was low, even in the context of other infections or autoimmune diseases:

Therefore, 16 (1.1%) of the 1480 Borrelia-LTT results must be regarded as false positives.

In 160 seronegative subjects/patients (120 healthy seronegative and 40 patients with autoimmune diseases), a specificity of 98,7% was found if the borderline results of SI > 2 < 3 were evaluated as negative. Weak false positive reactions (SI> 3 <5) were detected in only 2 cases. No differences were found between clinically healthy subjects and patients with autoimmune diseases.

For instance, it was only possible in individual cases to examine patients with active syphilis (n = 3) or leptospirosis infection (n = 2) for potential cross reactivity. In these few cases, there was no evidence of such cross-reactivity in the Borrelia-LTT. Allergies, autoimmune diseases and acute, persistent and latent viral infections (including HIV, EBV, CMV, VZV) have now been excluded, by further investigations, as a possible cause of false-positive reactions (unpublished data).

It's still a somewhat experimental analysis technique though, so you need to take this individual study with a grain of salt, but I haven't seen any actual data that indicates that IMD Berlin's Lyme LTT test generates a high percentage of false-positives.

Another Lyme test I find interesting is the Nanotrap® Urine Test. According to the study linked in that post, it was 100 % sensitive for acute Lyme, and 0% of the healthy controls tested positive. When they tested patients with possible chronic Lyme, 41 % tested positive. If this means that only 41% had chronic Lyme (and the rest had other infections/diseases), or if it means that it's less sensitive for chronic Lyme compared to acute Lyme, is unknown.